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Author
Topic: Thank you so much for this forum!!!!! (Read 7620 times)

This forum could not have come at a better time in my life. Thank you so much.

My story:

The last 14 years of my life I have spent in a relationship with Marco. We met when he was 22 and I was 26. We met at the gym (what a cliche).Our relationship has been no walk in the park, yet I love him more than anyone in the world. He is my family, my best friend, my own sympathetic character. Marco was the one who first believed in me. He encouraged me to go to college and then law school. He makes me laugh and sometimes cry.

Last August we had one of a few separations. I moved back up to the San Francisco Bay area (Berkeley) to take a new job and start a new life.We hadn't been getting along. For the past few years Marco had issues related to severe depression and had wild mood swings. For the previous three months he had been losing weight. He lost over 30 pounds and had constant digestive difficulties. The year before I had a scare. During one of our break ups I had a relationship with a person and had done some risky things. I had the whole "worry wort" experience. I tested 16 weeks later and came back "non-reactive". ( Your website was a great help to me during this period in my life, once again, thank you!) During this time I kept telling Marco to get tested. His response was a strong "I know what I have done and I am not worried."

After I moved he continued to lose weight. A month ago he finally got the rapid oral test. He called me that Sunday afternoon and after exchanging a few pleasant words stated "Look, I am going to get to the point. I tested positive today." I immediately started crying. He advised me that he would be getting his labs done and the results would be ready in a couple weeks according to the counselor where he was tested.

His results came back his CD4 count is lower than 100. He was hospitalized for PCP and an allergic reaction to bactrim.

This last weekend I flew down and saw him. I did everything I could. Laundry, dishes, and grocery shopping. Terrible cook that I am, I prepared a weeks worth of meals for him. It was so nice to be there with him. From now on I will fly to Los Angeles on weekends and do these things for him. During this time I felt less helpless, less lost. I hope he did too.

Right now I am scared for him. He does not have a resistance to any of the meds and I am hoping that he will respond well. It is funny how all of the things that seemed so important seem so trivial now. He refers to me as his "ex" and I don't mind nor do I care. After 14 years I feel that we are beyond descripton and definition as far as labelling our relationship. I just know that I want to be there for him. I want to be a constructive force in his life. I want to help any way that I can.

Thank you for giving me the opportunity and space for me to share my feelings. It feels so good to let it out. This forum is important. Often times people have relationships that don't fall into simple and discreet categories. I for one felt that I would be over-stepping boundaries by posting in the "Living With" section. I also wanted him to have that space to discuss what he is going through. BTW Marco is not his real name. I want to protect his privacy, but Scott is my real name. ( I have never been a very private person ).

Any suggestions as how I can be a better and more supportive person in his life will be greatly appreciated.

Lordy, child...it sure reads like you are off to a fantastic start to me! I'll leave it for others to come forward with ideas about better caregiving. But suffice it to say that simply having someone you love in your corner means the world.

If it helps you to feel a little less scared at all, I can testify that I was well below 100 t cells when I started treatment. My last count (six weeks before I started meds) was 89 CD4's and falling. I'm undetectable these days and have CD4's in the 300-400 range.

Scott you sound like a wonderful person and Marco is lucky to have you for a friend. You might suggest that he check out our site...it can be a valuable resource for people dealing with HIV.

Take care of yourself and your own emotional needs...you can't help if you become a basket case. As I said before, you have discovered a valuable resource and I hope we can be a source of information and support for you. Don't ever be afraid to ask. Again welcome!!

Thank you so much for your response. Your words are a great help to me. I have been dropping by the local "Stop Aids SF" and getting a lot of infomration. I have spoken with several people who also had CD4 counts below 100 and are now doing well. It is great that you have responded so well to treatment, and your sharing this information makes me feel a great deal better. My hope grows as I hear more stories like your own.

Right now I want to hit the "fast forward" button and have his CD4 count higher. His viral load is fairly low (around 20,000) and that makes me feel better. I am so glad that I found this website last year. I learned so much here and I feel that I have been better able to share information with him due to the great wealth of information that I found year in the previous year.

The internet is an interesting thing. Often you don't know how many lives you touch or how many people you help. Your website has personally helped me greatly by providing clear information.

He has been going here and has received a great deal of support. Many have emailed him and he really loves this site. I sort of leave the "Living With" forum as his "territory".

It is strange how life often works in a full circle. A year ago I was glued to this site, and found the strength to face my fears and get tested. I also learned more here about HIV than any other website. For the second time this place has provided me with comfort.

I've got another good bit of news to relay to you then: At diagnosis, my viral load was off the charts...> 750,000. Or, as I like to call it, 'a gazillion infinity squared'. LOL That low viral load of his is good news...it took me several months of meds to get DOWN to 26,000.

Also, to build on Dachshund's excellent post above, I would also suggest that you might want to spread the word about this to any other people you might know who are in a similar position to yourself: a loved one / caregiver of someone with HIV. While we poz people can give our two cents, a major goal of this forum is to give a place for people in your roles to talk out issues amongst yourselves and discover/offer solutions to one another. As more 'caregivers and loved ones' come to discover this forum, you'll end up with a broader support network of indivduals in the same boat as yourself. I know that network has helped me in untold ways.

That is good news. I told him that I read that a VL under 100,000 copies is considered to be "low". I just got off the phone with him. There is still another delay regarding his meds due to abnormal liver enzymes. They also took him off of Mepron and put him on a once a month treatment to prevent the OIs. I am glad that he has good insurance coverage. It also seems that the entire medical and support team he is dealing with consists of intelligent and thoughtful people.

One of the concerns I have has to do with Sustiva. They are talking about putting him on Sustiva and Truvada and then switiching him to the once a day version (Atripla). I have known people who have had a rough time on Sustiva, especially with the CNS complications. Marco is prone to depression, and I am concerned that this drug may impact him detrimentally in this regard. However, I understand that Sustiva really kicks the virus in the ass, and I want him to have the "Mike Tyson" of anti-retrovirals in his corner. I just don't want to see him get slammed by it.

He and I discussed having him spend the first few days of meds at his sister's house when I am not there. This would provide a feeling of comfort and safety and someone to run to if he has bad "Sustiva" dreams. I also read here that watching erotica before bed on Sustiva allows for some interesting dreams. Hopefully not all of the side effects will be unpleasant ones.

Today he read some of Ann's blog entries and found them helpful. I read Jonathan's last blog entry yesterday and was greatly moved. It really ripped into me and gave me more insight. I am an emotional Italian-American and it is easy to send me to tears. I try not to cry in front of him, but I cry openly and freely when not at work since all this came down. The thought about caring about what strangers think, or feeling the need to hide my pain seems profoundly unimportant. Crying actually feels good right now, I feel like I am letting the air out of a big balloon about to burst. After I cry, I feel stronger. It is amazing that something so traditionally associated with weakness gives me strength. Yet it does.

You sure do strike me as a very intuitive individual! Yes, if the tears are making you feel stronger, let 'em rip! I think the crying can be a natural part of the healing process of learning to live with HIV...for yourself or a loved one. It's a normal response. While HIV doesn't always signal 'the end' as it once did, it does signal big changes in the way we live. But they are changes that can be faced and overcome or incorporated into our lives.

I wish I could tell you more about Sustiva and Truvada from personal experience, but those are not part of my med regimen. There are lots of threads about those drugs here, as well as information to be found in the 'Drugs' section here. My own combo is Kaletra and Combivir. If you have any questions about those, I will be glad to help you out with all I know. I would advise that you (well, Marco especially) keep the medical team well informed about the history of depression. That could have an impact on what combo they all mutually agree to try. I woud also remind you to peek in on the forums 'Treatment Questions' and 'Side Effects'.

I also say that having a family member or other loved one around when getting started on these meds might be a good idea...if Marco is on board with that. These drugs can really pack a physical punch when your body is first getting adjusted to them. My combo kicked my fanny for quite some time. It might help to have a loved one handy- if for no other reason than the comfort of proximity.

Tim

PS- Jonathan has always been able to turn me inside out with his beautiful words. What a gift he has! What a gift he shares!

Firstly, let me say how sorry I am that your friend has tested positive. It sounds as if he is getting good treatment and it will be invaluable to have your support. Please take heart from the fact that there are many folks on these forums who have bounced back from CD4 counts well below 100. It will not be easy and will require dedication and discipline. Please cherish your time together